Cultural Challenges of Organ Donation
Aug 19, 2020 Cedars-Sinai Staff
After six long years of waiting, Patrick Han received a life-changing call. The voice on the other end offered good news: a match for a donor kidney.
Without eligibility for a special Cedars-Sinai transplant program, however, his wait may have been considerably longer.
"Cultural attitudes and approaches to organ donation are complex."
For a kidney transplant in California without a living donor, patients wait anywhere between eight and 10 years, says Dr. Irene Kim, a Cedars-Sinai kidney and liver transplant surgeon.
California is known nationally for its long wait times. But geography is not the only factor. Donors and recipients get matched by blood group, and not all types (A, B, AB, O) donate organs equally.
That, explains Dr. Kim, is a challenge for individuals with blood type B, 70% of whom are of minority origin, including people who are Latino, Black, Asian and Pacific Islander. A reluctance by some cultures for organ donation means that patients like Patrick, who is Korean American, can be disadvantaged in organ transplant opportunities.
Patrick's need for a kidney transplant was diagnosed in April 2014, just six months after a joyful event: marriage to his wife, Jessica.
Reliance on kidney dialysis for four hours each Monday, Wednesday and Friday took a toll on his physical, mental and economic health. Waning energy levels left him unable to continue working the golf pro shop job he enjoyed.
As frustration grew, so did his care needs.
"We tried to live normally for as long as we could," says Jessica Han, but things became overwhelming. She quit her psychology graduate program to care for Patrick.
Looking back on that time, "It was very difficult," Patrick says. "I became depressed."
Patrick's parents volunteered to get tested for donor suitability. But with concerns about their age and wellbeing, Patrick didn't want them to proceed. Jessica completed testing, but she wasn't a match. Nor was one of her friends.
Patrick faced a vexing situation: those willing to be living donors were not a match.
No one else came forward.
"In my culture, people are very reluctant to be organ donors," he says.
Research bears this out. Black, Asian and minority ethnic groups have a high need for organ transplantation but a low donation rate, reducing chances for an organ match.
Organ donation attitudes are known to vary culturally. A 2010 study in the Journal of Pacific Rim Psychology, for example, found Korean university students less likely than their American counterparts to sign organ donor cards. Origins of organ donor reluctance among Asian communities is a source of speculation, but for some, the end result is an arduous wait—sometimes with tragic results.
"Cultural attitudes and approaches to organ donation are complex," says Dr. Kim.
Fortunately, availability of a kidney for Patrick was sped up through a national program recognizing compatibility between specific type A donors and type B recipients, boosting chances of a match. Cedars-Sinai was one of the first medical centers in Los Angeles to offer this program, so Patrick was fortunate—receiving his deceased donor transplant years earlier than he might have elsewhere.
While Patrick is still gradually recovering, his medical team, including Dr. Kim, is encouraged by Patrick's progress. "He's doing awesome now," says Dr. Kim.
Though COVID-19 has demanded careful lifestyle adjustments, compared to six long years of waiting at the mercy of dialysis, life now "is a lot less stressful," Patrick says.
Back to his passions—golfing and working out—and recently nabbing a new job, Patrick has a brighter, healthier future thanks to his donor kidney. Also, Jessica Han has been able to return to her studies. "Our whole family is thrilled," she says.
Reflecting on his transplant experience, Patrick has a wish: "I would just like to see Asian people in general be more open about that sort of thing."
“We'd love more people to be organ donors," says Jessica, "because six years is a really, really long time to wait."
"Hopefully, education and patient advocacy can help allay some of the cultural barriers that may exist," says Dr. Kim, "because one year of dialysis is one year too many."